Patient and relatives/carers experiences

We feature here the experiences of real MDS patients and their families and carers. They have been willing to share with us their stories and photos, in the hope that fellow patients will find it helpful to read how they have learned to live with MDS.

Readers who don’t know much about MDS will hopefully gain a better understanding of this complex disease by reading these patients' stories.

Please do send us your contribution – whether you are a patient, family member or friend:
Email it to info@mdspatientsupport.org.uk or call to our main office Tel: 020 7733 7558.

You may talk about any aspect of the condition, or how your experience has affected or changed you. Feel free to add photos as well.
Thank you in advance!

You are also invited to join our forum, a lively community of MDS patients sharing their own experiences and questions.

Suzie, diagnosed with MDS when she was 6 years old

Suzie, diagnosed with MDS when she was 6 years old

Suzie was 5 years old when she became unwell. She developed a really high temperature and chesty cough so we thought it was just a normal childhood virus. We presented her to out local GP and he prescribed antibiotics. However, she continued to spike high temperatures so we took her back to the GP I […]

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Reginald Hall Patient Story: at 95 and happily married

Reginald Hall Patient Story: at 95 and happily married

Reginald Hall’s story is an uplifting one. Reginald is an MDS patient who has been a member of MDS UK Patient Support group for quite some time. Lately we received a couple of letters from him and he allowed us to share them with our members on the website. We received Reginald’s first letter on […]

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Evie McClean

Evie McClean

Evie McClean is a young member of the MDS UK Patient Support Group. In July 2014, when she was 8 years old, Evie was diagnosed with leukemia. After 4 months of chemo she had 6 month of remission, but then she became ill again. In July 2015 she was diagnosed with MDS and bravely endured […]

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Shirley O’Brien MDS Story

Shirley O’Brien MDS Story

Five years ago, my spouse and I had settled into our dreamed-of retirement. But on Feb. 6, 2012, I was diagnosed with myelodysplastic syndrome (MDS). Because I was in my early 70s, a bone marrow transplant wasn’t my best option.

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Patient’s Story: Linda takes part in a clinical trial

Patient’s Story: Linda takes part in a clinical trial

I first visited my GP in March 2014 with the symptoms of a condition which was eventually diagnosed as Sideroblastic Anaemia. I was 59 years old, still working full time as a Chartered Accountant, and enjoying a life without any responsibility except for work and home. The Haematology Clinic at the PRU and the Supportive […]

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Sachiyo Ishii tells us about her mother’s MDS

Sachiyo Ishii tells us about her mother’s MDS

Sachyio lives in the UK. Her Mum has MDS, but lives in Japan. A few of our members have family far away, and when travel is particularly difficult or expensive it gets really hard. So this is the contribution of one daughter – helping her Mum cope with MDS and helping to raise awareness internationally. […]

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Anna Sherratt

Anna Sherratt

Back in August 2015 I was noticing how tired I was. I would sit down in the evening feeling totally exhausted and then castigate myself mentally that I hadn’t accomplished everything I had planned to do. Was there something wrong with me? First symptoms… Am I old and fat? I had reacted badly to a […]

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Nigel Walpole

Nigel Walpole

My MDS story unusually starts some years before diagnosis. In about 2006 or thereabouts, my sister was diagnosed with MDS. Despite the very best of care and specialist treatment at King’s in London, her condition became AML and she sadly died in 2011, aged just 57. During her illness I became all too familiar with […]

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Emma Paine

Emma Paine

I have been fighting blood cancer for 12 years, and I have been fighting it hard. I have taken every opportunity given to me to treat it and live my life to the fullest. When my MDS relapsed and showed signs of progression to AML in July 2015 I was shocked to find out that […]

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Brenda Goodland

Brenda Goodland

Brenda’s MDS was diagnosed in 2008. For six years she was in a “wait and watch” period; having regular three month blood tests and an annual bone marrow test. MDS did not stop her from living a full and busy life. In 2016 she suffered from severe pneumonia and a bone marrow test revealed that […]

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Christina Fowler

Christina Fowler

Christina was diagnosed in 2009 with MDS/RARS at her local hospital in West Sussex by Dr Narat and has been treated at Kings since 2011. Read Christina’s story and her helpful TIPS TO STAY POSITIVE WITH MDS. First I asked “Why me?” then started to make adjustments I was diagnosed in 2009 with MDS/RARS at […]

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Jayne Snell

Jayne Snell

Jayne writes about her MDS diagnosis and treatments leading up to her stem cell transplant in July 2012.This article was published in the MDS UK Newsletter 3 and 4 – in January 2013 – and Sept 2013.”I lived 42 years with my original blood and immune system; the plan is to live 42 years with […]

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Maynel Vessey

Maynel Vessey

Secondary MDS (following breast cancer) – with chromosome 11q deletion Diagnosed 2010 – age 67.  Watch and Wait/Watch and Monitor “I have never met anyone else with M.D.S. but would love to hear from anyone with similar experiences.  Unfortunately I am a techno-dinosaur, but Sophie has my address.” Watch and Wait/Watch and MonitorI was diagnosed […]

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Daisy Turner

Daisy Turner

Daisy, diagnosed as a teenager, is one of the uncommonly occurring cases of MDS in young people.  Although Daisy was successfully treated with Bone Marrow Transplant few years ago, her journey with cancer hasn’t ended there. She decided to use her experience for the benefit of other young people suffering from cancer in UK and […]

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Anthony Abel

Anthony Abel

Anthony, diagnosed with high-risk MDS and is currently being treated with Azacitidine. His route to diagnosis wasn’t a straightforward one and required a deal of determination and perseverance on his behalf to find the cause of the symptoms with which he was struggling for some time. Sadly, this also had an knock-on effect on his […]

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Rodney Taylor

Rodney Taylor

Rodney was diagnosed with MDS at the age of 64. Within a couple of years, his symptom-free illness, at first, progressed to a hugely debilitating condition. Having entered a clinical trial of a promising drug treatment with azacitidine, Rodney was eventually freed from fatigue and transfusions for 4,5 long years, and decided to actively campaign […]

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Andrea Lacey

Andrea Lacey

Andrea diagnosed with MDS RAEB-t type at the age of 29 was treated with bone marrow transplant in 1994, but relapsed a year later. With 5% chance of success, she was advised against the second transplant. Following a gruesome period of intensive chemotherapy treatment, she fought to have a last-chance treatment called donor lymphocyte infusion […]

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Margaret Shepherd

Margaret Shepherd

This is the contribution from a loving daughter, who looked after her Mum.  This was written to help other family members or patients to prepare themselves when it is established that nothing else can be done – or if a patient has decided they do not wish to undergo any further treatment.It is written in […]

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